my lungs suck at being lungs

by kaleidegirl

today is my 11th day in the hospital. i attempted to sleep in because i am NPO, nothing by mouth, because of a test they are doing today. at some point. they have to just fit me in when they can. they said the most notice they can give me is about half hour. it is annoying because i haven’t had anything to eat or drink since about 10pm last night. just sips of water to take meds. also not knowing when bothers me because my daughter is coming to see me. she says she’s bringing her laptop so she won’t be bored if she has to wait for me.

the drs ordered these tests in the hopes that the results will increase my LAS. this would help me get my call sooner. it is sort of like bumping me up on the list. even though the list is more like a pool.

i’ve already gotten one test done. the breathing test and 6 minute walk. the breathing test show my lung function and the walk is to be sure i can walk 450 feet in 6 minutes. it is a requirement for being on the list. i wasn’t worried about the walk. i have been walking something like 3000 feet every day 2 to 3 times a day. granted i need a lot of oxygen and have to walk slow but my body is staying strong and that is what matters.

the tech who did my testing is one of my favorites. she’s very nice and funny and we get along well. she calls me the queen of darkness or something and she was very amused to learn that i am afraid of the dark and very photosensitive. she made it easier to deal with the difficulty of the test even if she was a brat. 🙂

in order to get to the pulmonary function lab for my testing i had a special transport team called SWAT, “Specialized Workforce for Acute Transport”. they are specially trained nurses and EMT’s. there were 3 of them and they loaded me up on a stretcher with all of my monitoring equipment and made sure i was safe. i felt weird being on a stretcher because i am able to walk, albeit with lots of oxygen, but still, i can walk.

the other test i’m waiting on is the right heart catheter test. they will go in through my neck and test/measure the pressure in my heart to see if my pulmonary hypertension has worsened. they are hoping this test will also help them raise my score. no idea when this will happen and i’m seriously still wanting coffee. it is too late for caffeine though of course. i’m a little anxious about this test. i’ve done it once before and it is a bit uncomfortable and they way they go in through my neck is a little jarring. i have my head turned but i can still see the activity around me on that side in my periphery. i also needed extra sedation last time which i hope doesn’t happen again. I’m hoping Mary will get here before i go and will come with me. she can use her laptop anywhere and it would be nice to have someone with me right up until i go back and right away when its done.  i know Chris wishes he were here. he tries to be with me for tests like this. but he’s gotta work as much as he can because my lungs are sure to come sooner than later.

so today has been a weird day. morning was a bit busy in here off and on. drs and making plans for my tests and all of that.

everyday it seems the big picture plan changes. one day its “no way you are going home right now” and the next its “maybe we’ll get you home tomorrow”. i don’t get my hopes up and i’m technically OK with staying here until i get my lungs. my breathing is still very bad and its a bit scary when i accidentally do a little too much. i use the non-rebreather mask at 15L just to walk a few steps to the toilet or to my bed. i’m on 8L with the high flow nasal cannula at rest but if i talk too much or move around too much my sats drop into the 80’s. so i don’t know why they are ok with me at 8 rather than 10.  they are the drs though so i will keep doing what i am supposed to and keep them up to date on my breathing.

i just realized the only walking i’ve done today was my 6 minute walk test. so even though i’m in heap big pain, i need to get out there and walk.